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Priority Agenda

The Arc, AAIDD, ANCOR, AUCD, NACDD, and UCP acknowledge that many vital federal laws affect our constituency. To further the promise of the Americans with Disabilities Act and the U.S. Supreme Court’s Olmstead decision, major programs which provide supports and services must be aligned with principles of encouraging and supporting non-discrimination and full inclusion in community life. Such programs also must be accessible and available to those who need them and must be dependable, even in difficult economic times. Medicaid and Social Security provide vital supports to our constituents; potential changes to either program, therefore, require significant attention to the possible impact on people with disabilities. The relationship between Medicaid and direct support workers requires very close policy coordination. Availability of affordable, accessible housing remains a major issue for people with disabilities in communities across the country. A free, appropriate education for students with disabilities remains the lynchpin to a productive and independent adulthood. Family support, although severely underfunded, is very cost effective and best reflects the type of care favored by our nation. Thus, the agenda related to Medicaid, Health Care, Long-Term Community Services and Supports, Social Security/Income Maintenance, Education, Direct Support Workers, Employment, Training, and Wages, Family Support, Housing, Civil Rights, and Technology constitute our highest priorities.

Medicaid

Medicaid is the lifeline for most people with significant disabilities. The Medicaid program is overwhelmingly the largest funding source of long-term individual and family supports in the federal/state intellectual/developmental disabilities system, and the primary source of health care payment for many of our constituents. For the increasing number of individuals with disabilities living with aging parents, Medicaid will be essential to meet their future need for long term services and supports.

The state of the national economy has already placed undue pressure on the states. Many states have frozen already inadequate reimbursement rates and reduced services, with devastating impact on people with disabilities, their families, and their communities. Today, many of our constituents cannot get health care and long-term services. Further shifting responsibility for Medicaid to the states and increasing flexibility that allows states to reduce eligibility and benefits would place many of our constituents and our nation’s health, therapeutic, and long-term care systems for vulnerable populations at enormous risk. When people with disabilities do not receive the services they need, it often jeopardizes the ability of family members to be employed. Medicaid is an important national program that should ensure portability of benefits across states.

Medicaid is a powerful driver of economic activity at the state and local levels. When Medicaid service provider agencies are able to retain staff positions, unemployment is reduced and money gets put into the hands of individuals who will spend it. In addition, Medicaid reduces health care costs by allowing people with disabilities to utilize home and community-based services and supports rather than costly and unwanted institutionalization.

Due to the severe economic downturn facing an overwhelming majority of states across our nation, most states are cutting Medicaid spending. Such cuts will have a dramatic impact on our constituents who depend on this program for critical health and long term services. Decreased Medicaid budgets also mean that hundreds of thousands of people with developmental disabilities will remain on waiting lists across the country. Equally disconcerting is the loss of many qualified staff when jobs are eliminated due to Medicaid cuts.

Numerous improvements were made to the Medicaid acute and long term services and supports programs through enactment of the Affordable Care Act of 2010 (ACA). These program improvements must be properly implemented at the federal and state levels in order to work most effectively for people with disabilities. States must be provided with clear guidance on how to effectively use the flexibility and options created by the ACA.

Health Care

Our organizations are committed to maintaining the comprehensive health care reforms achieved in the passage of the Affordable Care Act (ACA). With the enactment of the ACA, we have made significant progress towards accomplishing our nation’s goal of universal access to high quality affordable health care for all Americans. The ACA includes historic coverage expansions, nondiscrimination and health insurance reforms, strengthened prevention provisions, and numerous enhancements to Medicare, Medicaid, and other provisions that will significantly benefit people with disabilities. It is critical that the essential benefit package designed for the new health care exchanges meet the needs of people with disabilities and special health care needs. Protecting the significant achievements of the ACA will be our highest health care priority. In addition, our organizations will work to advance the legislative agenda that was not addressed by the ACA or only partially addressed.

Long Term Community Services and Supports

The demand for long term services is a critical issue in the 21st century. However, the nation has lacked a comprehensive, proactive national public-private system for delivering long term services. The current system is a patchwork of inadequate funding—with the largest source of federal funds provided by the Medicaid program that requires most people to be impoverished to receive services. With the first of the “baby boomers” retiring, the need for qualified support workers and family caregivers will exacerbate severe inequities in the ability of individuals with significant disabilities of all ages to live in integrated settings of their own choice.

In order to meet this national challenge, the federal government must take the lead in developing a coordinated, comprehensive approach to long term supports and services (LTSS). Since Medicaid has become the core of federally supported LTSS, the philosophy of the Medicaid program must be changed to reflect the preference for community-based services over institutional services. Significant progress was made with the enactment of the Community Living Assistance Services and Supports (CLASS) Act, as part of the Affordable Care Act, to establish a national long-term supports insurance program. This insurance plan was designed to assist people in meeting their needs and allow many to avoid impoverishing themselves to become eligible for the Medicaid program. However, its promise has yet to be realized – Congress repealed the CLASS Act as part of the American Taxpayer Relief Act and established a Commission on Long Term Care to make recommendations on long term supports and services.

Social Security/ Income Maintenance

Social Security is not only a retirement program. It is an insurance program to protect against poverty in retirement or as a result of disability or death of a family wage earner. More than one-third of all Social Security checks go to non-retirees, including over ten million people with disabilities. These beneficiaries include workers with disabilities and people with disabilities who are dependents and survivors of disabled workers, retirees, and deceased workers. Many depend solely on their Social Security or Supplemental Security Income benefits and related health coverage for their basic survival. Discussions about Social Security reform, however, usually focus on retirement benefits and seldom address potential effects on people with disabilities in the retirement, disability, and survivors programs.

We support efforts to ensure the solvency of the Social Security Trust Funds over a 75-year time frame while preserving the program’s basic structure and strengthening its insurance functions. We do not support efforts to create private accounts out of the Social Security Trust Funds. The impact of the resulting market risk, benefit cuts, or additional trillions of dollars in deficits would be devastating for people with disabilities.

People with severe disabilities experienced increasingly long delays and decreased service in accessing critical Social Security benefits for many years. Processing times grew, especially at the hearing level where delays reached intolerable levels. In some hearing offices, claimants waited more than two years to receive a hearing and decision. After years of advocacy efforts, Congress and the Administration began to devote substantial resources to reducing the backlog and the waiting times began to come down. However, with the recent economic crisis and the aging of the population, the Social Security Administration is receiving hundreds of thousands more applications than usual and the backlogs are growing and pressures in the claims and hearings offices are growing again despite the increased resources. Behind the numbers are individuals with disabilities whose lives have unraveled while waiting for decisions – families are torn apart; homes are lost; medical conditions deteriorate; once stable financial security crumbles; and many individuals die.

Education

Public education for all is a cornerstone of our democracy. It is the mechanism by which this nation prepares all students to pursue the benefits of freedom and to exercise fully their rights and responsibilities as citizens. The Individuals with Disabilities Education Act (IDEA) ensures that children with disabilities not only have the right to attend public schools but have access to the general education curriculum and meaningful educational experiences. Similarly, the Elementary and Secondary Education Act (ESEA), also known as the No Child Left Behind Act (NCLB), recognizes that our educational system must ensure that all children have access to a high quality education. Accordingly, leaders must continue to align special education and general education laws.

To ensure that the goals of the IDEA and ESEA are met, students with disabilities must be held to the same high expectations as their non-disabled peers, and their academic progress must be accurately measured and reported. In addition, student assessments and educational services must be culturally competent. Moreover, all facets of the educational system must share responsibility for the academic and social outcomes of all children.

Students with disabilities face multiple attitudinal, environmental, financial, and support barriers in accessing postsecondary education. During a student’s education there will be several major transitions, such as moving from early intervention to preschool, from elementary to secondary education, and ultimately, from the school system to adult living, including employment and/or higher education. The Higher Education Opportunity Act (HEOA) offers an opportunity for students with intellectual disability to overcome some of those barriers and have access to a postsecondary education that was until recently unavailable.

Direct Support Workers

A well-trained, adequately compensated direct support workforce is essential to providing the necessary supports and services to our constituents, where they live and work. The current Medicaid reimbursement system, and cost cutting actions by state legislatures and Medicaid officials, has exacerbated the workforce crisis hampered by low wages, a lack of health insurance, high turnover, and a shortage of staff. These problems have been compounded over three decades, leading to a crisis that presents a grave threat to the lives of our constituents and their families. Medicaid is the primary source of funding for the programs employing these workers.

Employment, Training, and Wages

People with I/DD can be employed in the community alongside people without disabilities and earn competitive wages. They should be supported to make informed choices about their work and careers and have the resources to seek, obtain, and be successful in community employment.

The vast majority of our constituents who are of working age remain unemployed or under-employed. In fact, people with disabilities constitute the segment of our society that is least employed. Given the overall high unemployment in the private sector, people with I/DD face a daunting task in securing employment. People with disabilities want to work, pay taxes, and be contributing members of society.

Family Support

An estimated 75% of people with I/DD live at home with family and most families receive few or no services and face long waiting lists for needed supports. Families of children with disabilities continue to face obstacles to finding and keeping high quality, inclusive child-care. As a result, families often lose jobs, lose income, and face financial challenges, in addition to not receiving necessary supports for their children to meaningfully participate in appropriate programs. Children with disabilities remain less ready to learn in school because they cannot access the same early care and education programs as their peers. Beyond childhood, life-long caregiving for individuals with disabilities, without support or assistance, has long-term negative economic, health, and social impacts on the well-being and quality of life of families. Families with relatives who have developmental disabilities are more likely to live in poverty than other families. Women, providing the bulk of informal caregiving, often juggle caregiving and employment. As people with disabilities are living longer, siblings are playing increasingly important roles across the lifespan and frequently assume primary caregiving responsibilities when aging parents are no longer able. Currently, there are over 730,000 people with I/DD living with aging caregivers (over 60 years of age), a population rapidly growing and in great need of services and supports. Given our nation’s fiscal challenges, it is likely that greater numbers of individuals with I/DD will be living with their families for longer periods.

Housing

Across the nation, people with intellectual, developmental, and physical disabilities face a crisis in the availability of decent, safe, affordable, and accessible housing. Over 730,000 people with I/DD live with aging parents (at least one of whom is over age 60). For people who use wheelchairs or other mobility devices, finding housing with even basic accessibility features (e.g., an entrance with no steps) ranges from daunting to impossible. While there are unique issues in urban, suburban, and rural areas, this difficulty is magnified in rural areas where there is a scarcity of any rental housing and new units are rarely developed. For people with disabilities whose resources are limited to Supplemental Security Income benefits, the affordability crisis is even worse.

Civil Rights

Voting Rights Reform

Individuals with disabilities, individually and collectively, offer an important and needed voice within the voting public. Ensuring voting independence, accuracy, and access continue to be key issues for this constituency. The Help America Vote Act (HAVA) of 2002 required fully accessible voting machines for people with disabilities by January 1, 2006. This promise has not been fulfilled. According to a September 2009 Government Accountability Office (GAO) report, too many polling places and voting technology throughout the country remain inaccessible. Additionally, state laws requiring voter identification and/or voting machines with “paper trails” have created inconsistency in voting technology and confusion among voters with disabilities.

Technology

Many people with disabilities could benefit from accessible technology and technology enabled supports to maintain independent lives and maximize health options. Advances in technologies will continue to affect the lives of people in dramatic ways. These technologies, including commercial off-the-shelf products, can be readily available from a variety of program funding sources and could help to make services more cost-effective. Congress should facilitate access to new technology from all sources to support the independence, inclusion, and community participation of people with disabilities.

In particular, the Assistive Technology Act (ATA) of 2004 called for new approaches on the part of programs authorized under the Act to assure that people with disabilities and their families are able to access the assistive technology they need. Funding of the ATA is key to making progress.